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INTRODUCTION: Reliable estimates of time from diagnosis until institutionalization and death in people with dementia from routine nationally representative databases are lacking.METHODS: We selected 9230 people with dementia and 24,624 matched controls from family physicians' electronic records linked with national administrative databases to analyze time until institutionalization and death and associated factors.RESULTS: Median time from recorded diagnosis until institutionalization and until death for people with dementia was 3.9 and 5.0 years, respectively, which was considerably shorter than for controls. Once institutionalized, median time to death was longer for persons with dementia (2.5 years) than for controls (1.2 years). Older age and receiving home care were the strongest predictors of shorter time until institutionalization and death in people with dementia. Gender, cohabitation, migration status, frailty, polypharmacy, and dementia medication were other significant factors.DISCUSSION: The estimates could help to inform patients, their families, and policymakers about probable trajectories.

BackgroundIdentification of community-dwelling older adults at risk of unplanned hospitalizations is of importance to facilitate preventive interventions. Our objective was to review and appraise the methodological quality and predictive performance of prediction models for predicting unplanned hospitalizations in community-dwelling older adultsMethods and findingsWe searched MEDLINE, EMBASE and CINAHL from August 2013 to January 2021. Additionally, we checked references of the identified articles for the inclusion of relevant publications and added studies from two previous reviews that fulfilled the eligibility criteria. We included prospective and retrospective studies with any follow-up period that recruited adults aged 65 and over and developed a prediction model predicting unplanned hospitalizations. We included models with at least one (internal or external) validation cohort. The models had to be intended to be used in a primary care setting. Two authors independently assessed studies for inclusion and undertook data extraction following recommendations of the CHARMS checklist, while quality assessment was performed using the PROBAST tool. A total of 19 studies met the inclusion criteria. Prediction horizon ranged from 4.5 months to 4 years. Most frequently included variables were specific medical diagnoses (n = 11), previous hospital admission (n = 11), age (n = 11), and sex or gender (n = 8). Predictive performance in terms of area under the curve ranged from 0.61 to 0.78. Models developed to predict potentially preventable hospitalizations tended to have better predictive performance than models predicting hospitalizations in general. Overall, risk of bias was high, predominantly in the analysis domain.ConclusionsModels developed to predict preventable hospitalizations tended to have better predictive performance than models to predict all-cause hospitalizations. There is however substantial room for improvement on the reporting and analysis of studies. We recommend better adherence to the TRIPOD guidelines.

Background Accurate identification of older persons at risk of unplanned hospital visits can facilitate preventive interventions. Several risk scores have been developed to identify older adults at risk of unplanned hospital visits. It is unclear whether risk scores developed in one country, perform as well in another. This study validates seven risk scores to predict unplanned hospital admissions and emergency department (ED) visits in older home care recipients from six countries. Methods We used the IBenC sample (n = 2446), a cohort of older home care recipients from six countries (Belgium, Finland, Germany, Iceland, Italy and The Netherlands) to validate four specific risk scores (DIVERT, CARS, EARLI and previous acute admissions) and three frailty indicators (CHESS, Fried Frailty Criteria and Frailty Index). Outcome measures were unplanned hospital admissions, ED visits or any unplanned hospital visits after 6 months. Missing data were handled by multiple imputation. Performance was determined by assessing calibration and discrimination (area under receiver operating characteristic curve (AUC)). Results Risk score performance varied across countries. In Iceland, for any unplanned hospital visits DIVERT and CARS reached a fair predictive value (AUC 0.74 [0.68–0.80] and AUC 0.74 [0.67–0.80]), respectively). In Finland, DIVERT had fair performance predicting ED visits (AUC 0.72 [0.67–0.77]) and any unplanned hospital visits (AUC 0.73 [0.67–0.77]). In other countries, AUCs did not exceed 0.70. Conclusions Geographical validation of risk scores predicting unplanned hospital visits in home care recipients showed substantial variations of poor to fair performance across countries. Unplanned hospital visits seem considerably dependent on healthcare context. Therefore, risk scores should be validated regionally before applied to practice. Future studies should focus on identification of more discriminative predictors in order to develop more accurate risk scores.

Objectives: We aimed to explore the effects of the Dutch COVID-19 lockdown (March 20–May 25, 2020) on mood, behavior, and social and cognitive functioning of older residents of long-term care facilities (LTCFs) prospectively. Design: Mixed methods: historically controlled longitudinal cohort study and focus groups. Setting and Participants: Residents of Dutch LTCFs. Methods: Residents who were assessed during and prior to the lockdown were compared to residents of the same wards with 2 assessments prior to the lockdown. We used mixed models and generalized estimating equation analyses to explore differences in changes in mood, withdrawal and aggressive behavior, loneliness and conflict, and cognition and delirium. We also explored whether the effect of the lockdown differed for different subgroups. In 2 online focus groups, LTCF care professionals, ranging from care staff to physicians, reflected on their experiences of the effect of the lockdown and the cohort study results. Results: The lockdown group of 298 residents was compared to the control group of 625 residents. Self-reported mood symptoms showed a slightly greater increase during the lockdown. During the first half of the lockdown, the level of conflict with other residents decreased whereas it increased in the control group. The subgroup with moderate-severe cognitive impairment showed a decrease in withdrawal during the lockdown, whereas the group with no-mild cognitive impairment showed a statistically nonsignificant relative increase. Professionals described great individual variation in the effects of the lockdown on residents. Facilities attempted to preserve the experienced positive effects, for example, by promoting tranquility in shared rooms and continuing to organize individualized ward-based activities. Conclusions and Implications: We did not find clinically relevant negative effects of the lockdown on mood, behavior, and social and cognitive functioning in older residents of LTCFs at the group level. Possibly, staff mitigated the negative effects at the group level. Meanwhile, they learned lessons that they continue to apply to enhance resident well-being.

Objectives To evaluate whether the prevalence of health problems in cohabiting partners of people with dementia differs between the year before and the year after 3 transitions: the diagnosis of dementia, institutionalization, and the death of the person with dementia. Methods Individuals with dementia and their partners were identified on the basis of data in the electronic health records (EHRs) of 451 Dutch general practices. EHRs were also the data source on their health problems, which were linked to the Dutch population registry and health administration data with demographic characteristics, date of institutionalization, and date of death. Differences in the prevalence of 16 groups of health problems and of specific health problems in partners during the year before and the year after the 3 transitions were examined using a generalized estimating equation. Results About 1,110 partners of persons with dementia were identified. Problems related to the illness and/or loss of the person with dementia were significantly more prevalent in the year after the dementia diagnosis (32% vs. 17%) and in the year after the death of the person with dementia (59% vs. 41%) than in the years before. Unspecified health problems were more prevalent in the year after the diagnosis than in the year before (30% vs. 22%). After institutionalization, an increase was found in digestive problems and urological problems (30% vs. 18% and 24% vs. 17%). Discussion Transitions during the dementia care trajectory, namely, the diagnosis, institutionalization, and death of the person with dementia, significantly affect the cohabiting partner’s health.

Objectives To describe symptomatology, mortality and risk factors for mortality in a large group of Dutch nursing home (NH) residents with clinically-suspected COVID-19 who were tested with a Reverse Transcription Polymerase Chain Reaction (RT-PCR) test. Design Prospective cohort study. Setting and participants Residents of Dutch NHs with clinically-suspected COVID-19 and who received RT-PCR test. Methods We collected data of NH residents with clinically-suspected COVID-19, via electronic health records between March 18th and May 13th, 2020. Registration was performed on diagnostic status (confirmed (COVID-19+)/ruled out (COVID-19-)) and symptomatology (typical and atypical symptoms). Information on mortality and risk factors for mortality were extracted from usual care data. Results In our sample of residents with clinically-suspected COVID-19 (N=4007), COVID-19 was confirmed in 1538 residents (38%). Although, symptomatology overlapped between residents with COVID-19+ and COVID-19-, those with COVID-19+ were three times more likely to die within 30 days (hazard ratio (HR), 3·1; 95% CI, 2·7 to 3·6). Within this group, mortality was higher for men than for women (HR, 1·8; 95%, 1·5-2·2) and we observed a higher mortality for residents with dementia, reduced kidney function, and Parkinson’s Disease, even when corrected for age, gender, and comorbidities. Conclusions and implications About 40% of the residents with clinically-suspected COVID-19 actually had COVID-19, based on the RT-PCR test. Despite an overlap in symptomatology, mortality rate was three times higher for residents with COVID-19+. This emphasizes the importance of using low-threshold testing in NH residents which is an essential prerequisite to using limited personal protective equipment and isolation measures efficiently., Summary:Despite an overlap in symptoms, mortality rate was 3 times higher for residents with COVID-19 than for residents with a clinical suspicion of COVID-19. Risk factors for mortality were male, dementia, kidney function and Parkinson.

Although ageing research increasingly incorporates resilience, a common notion on what resilience means is lacking. We aimed to give a comprehensive overview of the conceptual literature on resilience in older persons, identifying areas of consensus and variation/debate. A systematic search of eight databases from different disciplines led to the inclusion of 36 texts. Across the conceptual literature of resilience in older persons, three common features of descriptions of resilience were identified: a stressor, a response and a mechanism. Based on differences in their interpretation of how resilience is expressed we distinguished two perspectives. The first, classical and most widely applied perspective, describes the expression of resilience as a positive response to a high intensity stressor. The second, newer perspective, describes resilience in the context of responses relative to equilibrium, following low intensity stressors. Almost all descriptions across the two perspectives describe the resilience mechanism to be dynamic and emphasize the importance of the context in achieving resilience. This review provides clarity on the current conceptual status of resilience in older persons, an important step towards a higher level of consistency in the future use of resilience in ageing.

Background Previous research suggests that family caregivers contemplate suicide at a higher rate than the general population. Much of this research has been disease specific and in relatively small samples. This study aimed to compare suicidal thoughts between non-caregivers and informal caregivers of people with a variety of conditions, in a large representative sample, and to identify significant risk factors. Methods The general population study NEMESIS-2 (N at baseline = 6646) included 1582 adult caregivers at the second wave (2010–2012) who also participated at the third wave (2013–2015). Suicidal thoughts were assessed over 4 years, with the Suicidality Module of the Composite International Diagnostic Interview 3.0. The presence of suicidal thoughts was estimated and risk factors for suicidal thoughts were assessed with logistic regression analyses adjusted for age and gender. Results Thirty-six informal caregivers (2.9%) reported suicidal thoughts during the 4 year study period. The difference between caregivers and non-caregivers (3.0%) was not significant. Among caregivers, significant risk factors for suicidal thoughts included being unemployed, living without a partner, having lower levels of social support, having a chronic physical disorder, a mood disorder or an anxiety disorder, and having impaired social, physical and emotional functioning. These risk factors were also found in non-caregivers. No caregiving-related characteristics were associated with suicidal thoughts. Conclusion There was no elevated rate of suicidal thoughts in caregivers and risk factors for suicidal thoughts in caregivers were consistent with risk factors in non-caregivers. No association between caregiving characteristics and suicidal thoughts was found. Caregivers with limited resources and in poorer health might still benefit from prevention and intervention efforts.

Objectives Impaired awareness of functional deficits is often observed in people with Korsakoff syndrome (KS) and may result in refusal of care, although this area has been understudied. This study aimed to investigate levels of impaired awareness and their relationships with neuropsychiatric symptoms (NPS) in people with KS residing in specialized nursing homes. Methods A cross-sectional, observational study was conducted among 215 residents with KS or other alcohol-related cognitive disorders. Awareness was measured with the Patient Competency Rating Scale (PCRS). NPS and subsyndromes were measured with the Neuropsychiatric Inventory-Questionnaire (NPI-Q). Adjusted multilevel regression analyses were performed to examine the relationships between the level of awareness and NPS. Results The mean level of impaired awareness was 39.3 (SD = 19.9) indicating moderate impairment. Twenty-nine percent of the residents had no or mildly impaired awareness; 37% were moderately impaired, and 34% were severely impaired. Residents with moderately impaired awareness showed more severe apathy than residents with no or mildly impaired awareness (difference 1.23; 95% CI 1.02-1.48; p = 0.03). No associations were found between the level of awareness and other NPI outcomes. Cognitive functioning seems to have the strongest impact on the association between level of awareness and NPS in KS residents. Conclusions Impaired awareness of functional deficits is highly common in KS residents; however, apart from apathy, is not significantly related with NPS. Additional research should further examine, which interventions are effective in dealing with impaired awareness in these people, particularly when apathy is present.

Background Health care systems that succeed in preventing long term care and hospital admissions of frail older people may substantially save on their public spending. The key might be found in high-quality care in the community. Quality Indicators (QIs) of a sufficient methodological level are a prerequisite to monitor, compare, and improve care quality. This systematic review identified existing QIs for community care for older people and assessed their methodological quality. Methods Relevant studies were identified by searches in electronic reference databases and selected by two reviewers independently. Eligible publications described the development or application of QIs to assess the quality of community care for older people. Information about the QIs, the study sample, and specific setting was extracted. The methodological quality of the QI sets was assessed with the Appraisal of Indicators through Research and Evaluation (AIRE) instrument. A score of 50% or higher on a domain was considered to indicate high methodological quality. Results Searches resulted in 25 included articles, describing 17 QI sets with 567 QIs. Most indicators referred to care processes (80%) and measured clinical issues (63%), mainly about follow-up, monitoring, examinations and treatment. About two-third of the QIs focussed on specific disease groups. The methodological quality of the indicator sets varied considerably. The highest overall level was achieved on the domain 'Additional evidence, formulation and usage' (51%), followed by 'Scientific evidence' (39%) and 'Stakeholder involvement' (28%). Conclusion A substantial number of QIs is available to assess the quality of community care for older people. However, generic QIs, measuring care outcomes and non-clinical aspects are relatively scarce and most QI sets do not meet standards of high methodological quality. This study can support policy makers and clinicians to navigate through a large number of QIs and select QIs for their purposes. PROSPERO Registration: 2014:CRD42014007199.

Objective: To evaluate outcomes for persons with dementia and primary informal caregivers of 2 types of implemented case management (intensive case management [ICMM] and linkage [LM] models) with no case management (control group).Design: A pragmatic trial using a prospective, observational, controlled, cohort study.Setting: Community care in the Netherlands.Participants: A total of 521 dyads.Intervention: Case management provided within one care organization (ICMM), case management where multiple case management organizations are present within one region (LM), and a group with no access to case management (control).Measurements: Neuropsychiatric problems in persons with dementia assessed by the Neuropsychiatric Inventory (NPI) and psychological health in informal caregivers as measured with the General Health Questionnaire (GHQ-12). Secondary outcomes included care and support needs, quality of life, and institutionalization. Comparability of groups at baseline was secured by inverse-propensity-score-weighted mixed models.Results: No significant differences in changes in total NPI or GHQ-12 scores between the groups over 2 years were found. Secondary outcomes showed better quality-of-life scores for informal caregivers in the ICMM than the LM. Total needs, met and unmet care needs were significantly less in the ICMM compared with the control group.Conclusion: Neither case management type affected clinical outcomes of dyads meaningfully. The ICMM has positive impact on caregivers' quality of life and patient's number of needs compared with persons in LM and persons without access to case management respectively. (C) 2015 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

Objectives To examine the effects of an outreaching stepped care intervention program (Lust for Life) compared with usual care on depressive symptoms in older adults living in the community. Design Randomized clinical implementation trial. Setting 18 general practices and a home care organization in the Netherlands. Participants 263 community-dwelling 65+-year-olds with depressive symptoms according to the Patient Health Questionnaire-9 (PHQ-9). Intervention After three months of watchful waiting, participants could sequentially choose between the following evidence-based interventions: 1) guided self-help or an exercise program, 2) problem solving treatment or life review, and 3) a referral to their general practitioner. Measurements The outcome measure was depression severity (PHQ-9), measured every three months over 2 years. Results After the provision of the stepped care program, a significant short-term positive effect on depressive symptoms was found in the first three months after implementation, in which average PHQ-9 scores dropped from 9.34 (SE: 0.61, 95% CI: 8.14–10.5) to 7.83 (SE: 0.51, 95% CI: 6.84–8.81). Conclusions The Lust for Life program has a promising potential to relieve depressive symptoms of older adults in primary care in the short term. Providing one single clinical intervention in accordance with participants' choices instead of stepped care could be sufficient.

Objectives: Few studies have examined what might enable or prevent resilience in carers of people with dementia. Consequently, there are limited insights as to how it should be understood, defined and measured. This creates challenges for research, and also practice in terms of how it might best be promoted. This study aimed to address these limitations and add new insights, identifying the essential features of resilience in dementia caregiving. Methods: A Delphi consensus study was conducted, consulting a multi-disciplinary panel of informal caregivers and experts with relevant professional expertise. Panellists rated the relevance of various statements addressing essential components of resilience; ‘adversity’ and ‘successful caregiving’ on a 5-point Likert scale. Based on the median and Inter Quartile Range, the most relevant statements with moderate consensus were proposed in Round 2 in which panellists selected up to five statements in order of importance. Results: Moderate consensus was reached for all statements after two rounds. Patients’ behavioural problems and feeling competent as a caregiver were selected by both caregivers and professionals as essential resilience features. Caregivers also emphasized the importance of social support, the quality of the relationship with their relative and enjoying spending time together. Professionals considered coping skills, experiencing positive aspects of caregiving, and a good quality of life of caregivers most relevant. Conclusion: The essential elements of resilience selected from multiple stakeholder perspectives can be used to select appropriate outcomes for intervention studies and give guidance to policy to support caregivers more effectively and better tailored to their needs.

Different forms of case management for dementia have emerged over the past few years. In the COMPAS study (Collaborative dementia care for patients and caregivers study), two prominent Dutch case management forms were studied: the linkage and the integrated care form.Evaluation of the (cost)effectiveness of two dementia case management forms compared to usual care as well as factors that facilitated or impeded their implementation.A mixed methods design with a) a prospective, observational controlled cohort study with 2 years follow-up among 521 dyads of people with dementia and their primary informal caregiver with and without case management; b) interviews with 22 stakeholders on facilitating and impeding factors of the implementation and continuity of the two case management models. Outcome measures were severity and frequency of behavioural problems (NPI) for the person with dementia and mental health complaints (GHQ-12) for the informal caregiver, total met and unmet care needs (CANE) and quality adjusted life years (QALYs).Outcomes showed a better quality of life of informal caregivers in the integrated model compared to the linkage model. Caregivers in the control group reported more care needs than those in both case management groups. The independence of the case management provider in the integrated model facilitated the implementation, while the rivalry between multiple providers in the linkage model impeded the implementation. The costs of care were lower in the linkage model (minus 22 %) and integrated care model (minus 33 %) compared to the control group.The integrated care form was (very) cost-effective in comparison with the linkage form or no case management. The integrated care form is easy to implement.

Background: Previous estimates of depression recognition in primary care are low and inconsistent. This may be due to registration artifacts and limited extraction efforts. This study investigated a) whether GPs' medical records demonstrate an accurate recognition of depression and b) which combinations of indications within the record most accurately reflect a diagnosis of depression.Methods: GPs' registrations were compared with a reference standard, the Composite International Diagnostic Interview (CIDI), according to DSM-IV criteria. Six definitions of GPs' recognition of depression were tested using diagnostic codes, medication data, referral data and free text in the medical records. The Youden-index was used to select the optimal definition of recognition. Data were derived from the Netherlands Study of Depression and Anxiety. 816 primary care patients from 33 general practitioners were included in the vicinities of Amsterdam and Leiden, The Netherlands.Results: Registration of antidepressant prescriptions was the best single indicator of GPs' recognition of CIDI depression with a recognition rate of 0.43. The best combination of indicators increased the recognition rate to 0.69. All indications except the specific diagnostic codes for 'depressive disorder' and 'depressive feelings' were included in this definition.Limitations: Potential bias due to the selection of participating GPs might have influenced our recognition rates.Conclusion: GPs are aware of mental health problems in most depressed patients, but labeling with specific diagnostic codes is weak. Researchers should consider that diagnostic coding alone is not an accurate measure of the diagnostic ability of depression and strongly underestimates the accuracy of the GP. (C) 2011 Elsevier B.V. All rights reserved.

Objectives Dementia poses a substantial economic burden on society. Knowing which factors predict high costs in dementia may help to better target interventions and optimize resource allocation. This study aimed to identify predictors of the total societal costs in dementia patients and their informal caregivers. Design Prospective cohort study with 2-year follow up. Setting and Participants 192 community-dwelling patients with dementia and their primary informal caregivers in the Netherlands. Measurements Data on health care resource utilization, informal carer time and caregivers' work absenteeism were collected by cost diaries and interviews. Predictors of total costs were identified for patient–caregiver dyads, and for patients and informal caregivers separately by performing univariate and multivariate generalized linear models. Results Societal costs of patient-caregiver dyads averaged €75,084 (SEM: €4,263) in the first year and €99,369 (SEM: €6,441) in the second year. Sixty percent was attributed to costs of informal care. Patient impairments in activities of daily living (ADLs) and instrumental activities of daily living (IADLs), disruptions during daily activities of the caregiver, and receiving case management were significantly associated with higher costs in dyads. The same predictors remained significant for patients' costs separately, and for informal caregivers, a poorer caregiver's quality of life and having more chronic diseases determined higher costs. Conclusions The societal costs of dementia are substantial and mainly due to high costs of informal care. The burden for caregivers caused by a disrupted schedule and patients' ADL and IADL dependencies contributed most to the total costs. Interventions targeting these factors effectively might result in relevant economic benefits for society.

Objective Caregivers of persons with dementia play an important and economically valuable role within society, but many may do so at a considerable cost to themselves. Knowing which caregivers have the highest risk of developing a mental disorder may contribute to better support of ultra-high-risk groups with preventive interventions. This study aims to describe the incidence of depression and anxiety disorders in caregivers and to identify its significant predictors. Design Prospective cohort study with a follow-up of 24 months. Participants 181 spousal caregivers of persons with dementia without a clinical depression or anxiety disorder at baseline. Setting Memory clinics, case management services, and primary care settings in the Netherlands. Measurements The onset of depression and anxiety was measured every 3 months with the MINI International Neuropsychiatric Interview, a structured diagnostic instrument for DSM-IV mental disorders. Potential predictors were assessed at baseline. Results 60% of the caregivers developed a depressive and/or anxiety disorder within 24 months: 37% a depression, 55% an anxiety disorder, and 32% both disorders. Sub-threshold depressive symptoms (Wald χ2 = 6.20, df = 1, OR: 3.2, 95% CI: 1.28-8.03, p = 0.013) and poor self-reported health of the caregiver (Wald χ2 = 5.56, df = 1, OR: 1.17, 95% CI: 1.03-1.34, p = 0.018) at baseline were significant predictors of disorder onset. Conclusion Spousal caregivers of persons with dementia have a high risk to develop a mental disorder. Indicators related to the caregiver's (mental) health rather than environmental stressors such as patient characteristics or interruption of caregivers' daily activities predict disorder onset and can be used to identify caregivers for whom supporting preventive interventions are indicated.

Background: Dementia imposes a heavy burden on health and social care systems as well as on family caregivers who provide a substantial portion of the care. Interventions that effectively support caregivers may prevent or delay patient institutionalization and hence be cost-effective. However, evidence about the cost-effectiveness of such interventions is scarce. The aim of this study was to evaluate the cost-effectiveness of a family meetings intervention for family caregivers of dementia patients in comparison with usual care over a period of 12 months. Methods: The economic evaluation was conducted from a societal perspective alongside a randomized trial of 192 primary caregivers with community-dwelling dementia patients. Outcome measures included the Quality Adjusted Life-Years (QALY) of caregivers and patients and the incidence of depression and anxiety disorders in caregivers. Missing cost and effect data were imputed using multiple imputations. Bootstrapping was used to estimate uncertainty around the cost-differences and the incremental cost-effectiveness ratio (ICER). The bootstrapped cost-effect pairs were plotted on a cost-effectiveness plane and used to estimate cost-effectiveness curves. Results: No significant differences in costs and effects between the groups were found. At 12 months, total costs per patient and primary caregiver dyad were substantial: €77,832 for the intervention group and €75,201 for the usual care group (adjusted mean difference per dyad €4,149, 95% CI -13,371 to 21,956, ICER 157,534). The main cost driver was informal care (66% of total costs), followed by patients' day treatment and costs of hospital and long-term care facility admissions (23%). Based on the cost-effectiveness acceptability curves, the maximum probability that the intervention was considered cost-effective in comparison with usual care reached 0.4 for the outcome QALY per patient-caregiver dyad and 0.6 for the caregivers' incidence of depression and/or anxiety disorders regardless of the willingness to pay. Conclusions: The annual costs of caring for a person with dementia were substantial with informal care being by far the largest contributor to the total societal costs. Based on this study, family meetings cannot be considered a cost-effective intervention strategy in comparison with usual care. Trial registration: ISRCTN register, ISRCTN90163486. © 2013 Joling et al.; licensee BioMed Central Ltd.

Background:Depression in informal caregivers of persons with dementia is a major, costly and growing problem. However, it is not yet clear which caregivers are at increased risk of developing depression. With this knowledge preventive strategies could focus on these groups to maximize health gain and minimize effort.Methods:The onset of clinically relevant depression was measured with the Center for Epidemiologic Studies - Depression Scale in 725 caregivers who were not depressed at baseline and who were providing care for a relative with dementia. Caregivers were followed over 18 months. The indices calculated to identify the most important risk indicators were: odds ratio, attributable fraction, exposure rate and number needing to be treated.Results:The following significant indicators of depression onset were identified: increased initial depressive symptoms, poor self-rated health status and white or Hispanic race/ethnicity. The incidence of depression would decrease by 72.3% (attributive fraction) if these risk indicators together are targeted by a completely effective intervention. Race/ethnicity was not a significant predictor if caregivers of patients who died or were institutionalized were left out of the analyses.Conclusion:Detection of only a few characteristics makes it possible to identify high-risk groups in an efficient way. Focusing on these easy-to-assess characteristics might contribute to a cost-effective prevention of depression in caregivers.

Objective Although it is known that depression is highly prevalent in institutionalized older adults, little is known about its incidence and risk factors in nursing homes and residential care homes. The aim of this study was to investigate and compare the incidence and associated risk factors for depression in Dutch nursing homes and residential care homes. Design Data on depression were extracted from the Vrije Universiteit naturalistic cohort on routine care monitoring with the Minimum Data Set of the Resident Assessment Instrument. Participants A total of 1,324 residents in six nursing homes and 1,723 residents in 23 residential care homes with an average follow-up of 1.2 years. Measurements Depression was defined as a clinical diagnosis according to Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition , criteria and the use of antidepressants. Residents with prevalent depression at baseline were excluded. Results The incidence rate was 13.6 per 100 person years in the nursing homes and 10.2 per 100 person years in the residential care homes. The independent risk factors for in-home depression for residents in nursing homes included dementia (OR: 1.7; 95% CI: 1.02–2.95) and a score of 3 or more on the Depression Rating Scale (odds ratio [OR]: 2.1; 95% confidence interval [CI]: 1.23–3.70). A protective effect was seen on the use of a hearing aid (OR: 0.3; 95% CI: 0.12–0.80). In the residential care homes, being male (OR: 2.1; 95% CI: 1.27–3.30), having cancer (OR: 2.9; 95% CI: 1.64–4.95), and a score of 2 or higher on the Cognitive Performance Scale (OR: 1.5; 95% CI: 1.05–2.22) increased the risk to develop depression. Age greater than 85 years (OR: 0.5; 95% CI: 0.31–0.67) and hearing impairment (OR: 0.8; 95% CI: 0.60–1.00) appeared to be protective. Conclusions The incidence rate for depression in residents of Dutch nursing homes and residential care homes was high and the associated risk factors found may have important implications for staff.

BackgroundInterventions relieving the burden of caregiving may postpone or prevent patient institutionalization. The objective of this study was to determine whether a family meetings intervention was superior to usual care in postponing nursing home placement of patients with dementia.MethodsA randomized multicenter trial was conducted among 192 patients with a clinical diagnosis of dementia living at home at enrolment and their primary family caregiver. Dyads of caregivers and patients were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions with the primary caregiver and four family counseling sessions that included family members and friends. The primary outcome measure was the time until institutionalization of the patient. Intention-to-treat as well as per protocol analyses were performed. Survival analyses were carried out to evaluate the effectiveness of the intervention.ResultsDuring 18 months follow-up 23 of 96 relatives with dementia of caregivers in the intervention group and 18 of 96 relatives with dementia of caregivers in the usual care group were institutionalized. No significant difference between the intervention and the usual care group was found in time until institutionalization (adjusted hazard ratio (HR) 1.46, 95% confidence interval (CI) 0.78 to 2.74). The per-protocol analysis revealed no significant effect either (adjusted HR 0.57, 95% CI 0.21 to 1.57), although the number of placements among the adherers was relatively low (9.4%). A subgroup effect was found for patients' age, with a significantly higher risk of institutionalization for 'younger' patients in the intervention group compared with the usual care group (adjusted HR = 4.94, 95% CI 1.10 to 22.13).ConclusionThis family meetings intervention for primary caregivers of patients with dementia did not postpone patient institutionalization more than usual care.Trial registrationCONTROLLED-TRIALS.COM ISRCTN90163486.

To estimate and compare the prevalence and incidence of delirium and its risk factors in residents of Dutch nursing homes and residential care homes.Data were extracted from the Long-Term Care Facility (inter RAI-LTCF) version of the Resident Assessment Instrument, which was filled in a routine care cohort for a total of 3627 residents. 828 residents of six nursing homes and 1365 residents of 23 residential homes were included in the analyses. Delirium was defined as a positive score on the adjusted Nursing Home-CAM.The prevalence of delirium was 8.9% in the nursing homes and 8.2% in the residential homes. The incidence was highest in the nursing homes with 20.7 versus 14.6 per 100 person-years. Multivariate tests of risk factors for developing delirium included chair restraints (OR 2.3; 95% CI 1.27-4.28), dementia (odds ratio (OR) 3.3; 95% confidence interval (CI) 2.03-5.24) and Parkinson's disease (OR 2.3; 95% CI 0.96-5.63) for residents in nursing homes, and dementia (OR 1.8; 95% CI 1.31-2.55) and fall incidents (OR 1.7; 95% CI 1.20-2.48) for residents in residential care homes.The prevalence and incidence of delirium was high in both nursing homes and residential care homes. More focus on modifiable risk factors such as the use of restraints in nursing homes and fall incidents in residential care homes may help to prevent delirium.

Objectives: Depressive symptoms are common among elderly primary care patients, and because they encounter considerable barriers in seeking help and they often resist referral to specialized mental health facilities, it is important to look for easily accessible interventions within the primary care setting. Bibliotherapy, which has been found to be effective among younger populations, might be an attractive option. In this study, the authors investigated the effectiveness of bibliotherapy for depressive symptomatology in very old adults. Design: Randomized controlled trial. After a 3-month period of "watchful waiting," the participants were randomly assigned to a bibliotherapy group or a usual care group. Setting: Thirty-three general practices in the north-western region of the Netherlands. Participants: One hundred seventy community-dwelling adults, aged 75 and older, with subthreshold depression. Intervention: The bibliotherapy intervention consisted of an information leaflet and a self-help manual "Coping with Depression" adapted for the elderly. Measurements: Outcome measures after 3 months were a) change in depressive symptoms according to the Center for Epidemiologic Studies Depression Scale (CES-D) and b) the proportion of participants who scored a significant improvement on the CES-D. Results: One hundred forty-six (85.9%) of the 170 participants completed the baseline and follow-up measurements. The authors did not find any clinically relevant and statistically significant differences between the intervention group and the control group in the severity of the depressive symptoms. Conclusion: Bibliotherapy as a stand-alone intervention for the elderly (aged 75 years and older) did not reduce depressive symptoms more than usual care. This might indicate that bibliotherapy can only be effective for patients who are motivated and acknowledge their depression. © 2011 American Association for Geriatric Psychiatry.

Objective: Living with a demented person has been associated with high levels of clinical depression and anxiety. However, there are no prospective studies that allow good estimates of the incidence of depression and anxiety. In this study, the authors assess the long-term incidence of depression and anxiety in the spouses of patients with dementia as recorded by general practitioners. Design: Prospective naturalistic cohort study with a comparison group. Data from medical records in 2001-2007 were analyzed. Participants: Two hundred eighteen spouses of patients with dementia and 353 age and gender-matched spouses of nondemented persons. Setting:Seventy-one general practices in the Netherlands with a listed source population of 320,309 patients. Measurements: Incidence rates (IRs) per 1,000 person-years and hazard ratios (HRs) of depression and anxiety; prescription rates (per 1,000 person-years) for antidepressants and anxiolytics. Results: A new episode of depression was diagnosed in 18 spouses and 7 comparison spouses (IRs of 18.8/1,000 person-years and 4.4/1,000 person-years, respectively). Spouses of patients with dementia were far more likely to be diagnosed with depression than the comparison spouses (HR, 4.16; 95% CI: 1.73-9.98). Spouses did not have a higher incidence of anxiety than the comparison group (HR, 1.26; 95% CI: 0.58-2.71). The prescription rates for both antidepressants and anxiolytics were significantly higher for spouses than for the comparison group. Conclusion:The spouses of patients with dementia have a fourfold higher risk of a diagnosis of depression than the spouses of nondemented persons. The authors could not establish this for anxiety. © 2010 American Association for Geriatric Psychiatry.

Background: Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients. Methods: A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes), caregiver burden and quality of life (secondary outcomes). Intention-to-treat as well as per protocol analyses were performed. Results: A substantial number of caregivers (72/192) developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38) or in reducing depressive (randomization-by-time interaction coefficient = -1.40; 95% CI -3.91 to 1.10) or anxiety symptoms (randomization-by-time interaction coefficient = -0.55; 95% CI -1.59 to 0.49). The intervention did not reduce caregiver burden or their health related quality of life. Conclusion: This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial if provided in a more concentrated dose, when applied for therapeutic purposes or targeted towards subgroups of caregivers. Trial Registration: Controlled-Trials. © 2012 Joling et al.

Contains fulltext : 70773.pdf (Publisher’s version ) (Open Access) BACKGROUND: Dementia is a major public health problem with enormous costs to society and major consequences for both patients and their relatives. Family members of persons with dementia provide much of the care for older adults with dementia in the community. Caring for a demented relative is not easy and fraught with emotional strain, distress, and physical exhaustion. Family caregivers of dementia patients have an extremely high risk developing affective disorders such as major depression and anxiety disorder. Family meetings appear to be among the most powerful psychosocial interventions to reduce depression in caregivers.An American landmark study reported substantial beneficial effects of a multifaceted intervention where family meetings had a central place on depression in family caregivers as well as on delay of institutionalization of patients. These effects were not replicated in other countries yet. We perform the first trial comparing only structured family meetings with significant others versus usual care among primary family caregivers of community dwelling demented patients and measure the effectiveness on both depression and anxiety in the primary caregiver, both on disorder and symptom levels. METHODS/DESIGN: In this randomized controlled trial effectiveness as well as cost-effectiveness of family meetings is evaluated. The intervention group receives four family meetings with family and close friends of the primary family caregiver of a community dwelling patient with a clinical diagnosis of dementia. Dyads of patients and their primary caregiver are followed up to one year after baseline assessment. The main outcome measures are the incidence of anxiety and depressive disorders assessed with the Mini-International Neuropsychiatric Interview (MINI) and the severity of anxiety and depressive symptoms in caregivers is measured by validated self report instruments: the Centre for Epidemiologic Studies Depression Scale (CES-D) for depression and the anxiety scales of the Hospital Anxiety and Depression scales (HADS) for anxiety. The economic evaluation is performed from a societal perspective. DISCUSSION: By evaluating the effectiveness of only structured family meetings organized in the Netherlands, this study will contribute to the existing literature about the value of psychosocial interventions for dementia caregivers. TRIAL REGISTRATION: Dutch Trial Registry ISRCTN90163486.